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Christmas Break

The BDFA office will be closed from 23 Dec returning on 6 Jan 2020 for the Christmas break. Thank you for all your support over the past year, it is very much appreciated. Everyone at the BDFA wishes you a…

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Dear All This is my last blog as CEO of the BDFA. It has been 19 months since I joined and my contract is ending. As I write, I have two quotes going through my mind as they have been…

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Juvenile CLN3 Disease Outreach Service (juvenile Batten Disease)

Building on the wealth of experience at their world-leading specialist residential service, Heather House, SeeAbility have launched a unique outreach service across the UK, available to all families, professionals and caregivers supporting someone with juvenile Batten disease (CLN3). Sarah Kenrick is the Outreach Liaison Nurse…

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All donations help us to provide the best support we can to families affected by Batten Disease.

Thank you for your support.